it’s Christian Aid week and Christian Aid aim to help many around the world who are in horribly desperate situations. Watch this video before you consider how you respond to the collector who may ring your door bell.

Little Hearts Matter offers support and information, and raises awareness of those affected when a child has only half a heart, due to conditions such as Complex Pulmonary Atresia, Tricuspid Atresia, Hypoplastic Left Heart Syndrome (HLHS) or Double Inlet or Outlet Ventricle (Univentricular Heart).

The Beginning

Little Hearts Matter (LHM) was originally set up in 1994 at the request of parents of children who had a life threatening diagnosis of Hypoplastic Left Heart Syndrome. Known initially as Left Heart Matters, a volunteer team attempted to offer support to families whose children were sent to the only centre treating this complex condition in the UK, Birmingham Children’s Hospital. Parents felt very isolated by their children’s disease, the experimental nature of the surgery, the distances that they had to travel for treatment and the huge mortality rate that was the risk of treatment. Gradually, over the following two years, the charity grew, applying for charitable status in 1996. Other cardiac centres throughout the UK began to offer treatment and the charity’s services expanded to meet the needs of a growing membership. The services included parent-to-parent telephone support, hospital visiting and yearly information Open Days.

At this time the charity was run purely by volunteers, but in 1999 the Trustees applied for and were awarded a Lottery grant to support the further development of the charity’s work. This enabled LHM to move the work of LHM forward very swiftly. LHM could then offer telephone support, build a regional network service and could offer parents information on aspects of day-to-day life with a child with complex problems. The charity produced packs to help parents with disability allowances, and created a special antenatal support service for the 50% of families who had their diagnosis made during pregnancy. A website was also developed and many families from abroad began to seek services through the worldwide web, as well as looking at services that involved the children themselves. LHM was able to build on their reputation throughout the specialist paediatric cardiac service around the UK. Eventually clinicians began to make direct referrals to Little Hearts Matter.

Diagnosis

There are approximately 200 children diagnosed with Hypoplastic Left Heart Syndrome each year, but there are a further 400 diagnosed with other single ventricle conditions. As Left Heart Matters became a recognised service, families of other children with complex disorders sought help from the charity and medical teams began to request further referrals. The Left Heart Matters team wrote out to the membership requesting their thoughts on expanding the charity’s remit to include all families where a single ventricle condition has been diagnosed. They responded with a resounding yes, stating that they hoped the services could be available to all. Little Hearts Matter gained its new charity status late in 2003 and officially launched its new role in March 2004.

Over the past few years the charity has grown and grown. The charity receive up to six new referrals each week and offer a variety of support and information to members spread throughout the UK.

In 2012 LHM successfully gained the Information Standard accreditation. This is a Department of Health scheme developed to make sure that members of the public have access to accurate and impartial medical and lifestyle information. It means that members can be confident when accessing LHM publications and the information pages on their website.

Membership of Little Hearts Matter

Full membership of Little Hearts Matter is open to anyone with a single ventricle heart condition, as well as their parents, grandparents, legal guardians and siblings. Members must be at least 18 years old and must be British residents or citizens. Anyone who meets these criteria qualifies for full membership which is free.

All full members are entitled to have a say in the running of the charity.

Child Membership will automatically be given to children with single ventricle heart conditions and their siblings under 18 when their parents or guardians join the charity as Full Members. Associate Membership is open to anyone who has an interest in supporting the work of Little Hearts Matter, including professional colleagues.

Video

Support

You can find further information about the charity and supporting them through their website which is given below

Batten Disease is the common name for a group of diseases called the Neuronal Ceroid Lipofuscinoses (NCLs). These refer to several different genetic life-limiting neurodegenerative diseases that share similar features and occur in children and adults worldwide.

Although the different forms of NCL are sometimes described according to the age of the child at the onset of the disease, they are actually classified according to the gene identified as the cause e.g. CLN2 (gene) late-infantile (age of onset) disease and CLN3 (gene) juvenile (age of onset) disease.

The NCLs are estimated to affect 1:30,000 births with there being approximately 200 affected children and young adults in the UK. They are born apparently healthy yet subsequently develop epilepsy, lose their sight, speech, cognitive and motor abilities; before dying between the ages of 5-30 (dependent on the specific diagnosis). There is much research into the NCLs, but no cure at present.

Battens Disease Family Associatuion

The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten Disease. We are based in Hampshire but work with children, young people, families and professionals across the UK.We were in formed in 1998 with the help of SeeAbility and Contact-a-Family, by a small group of parents of children with Batten Disease . We were granted Registered Charity status in 2001 and the work of the charity has continued to go from strength to strength.Battens Disease Family Association Websitehttp://www.bdfa-uk.org.uk

If you want to find out more about Battens Disease or Support a charity then there are some useful links below

Battens Disease is an awful disease and only by raising awareness of it and by helping support research can we help in fighting against it. Please let others know about Battens Disease and than you for reading.

We all have so much to be grateful for and when others suffer it’s important that we rally to their Aide.

At goodeggorbadegg we feel this profoundly and we want to bring your attention to many wonderful charities who maybe don’t get as much attention as other charities because they are small and local.

Our blog is about fun. We want it to be a place where you can watch the odd silly video, latest pop song or read a review.

But what we really do want to be about is helping others. Please help us to do this by contributing to our charities by letting others know about them and raising awareness of them.

Your financial assistance to our listed charities is very much appreciated but we realise many people support charities privately and in their own ways. Only contribute if you want to and can afford to.

We would like your feedback on our blog. We need visitor numbers to help our listed charities so please let others know and re-blog. We would be very grateful.

If you have a charity which we can help support then please please get in touch as helping others is great and every time we see a donation to our charities it makes THIS blog more than worthwhile.

The Zak Scott Braveheart Foundation was set up in memory of ‘braveheart’, Zak, in September 2011.

Having being born with a congenital heart condition, Zak attended the Royal Hospital for Sick Children Glasgow (Yorkhill) throughout his life. Zak was fortunate in being able to be provided with most things he wanted, but was always aware of those who were in a similar position or less fortunate. Zak expressed a wish for all children and young people who were in hospital for cardiac surgery to have a special gift for when they came back from theatre, just as he always had. Zak also took great comfort in keeping notes in a journal during his hospital stay. The journal was used to document Zak’s feelings, particularly his worries and fears and he asked those involved in his care to write how they thought he was progressing each day. Zak thought that this might also be of some comfort to other young people who were going through the same and hoped to encourage them to document their own journey. The charity would like to carry out his wishes through this Foundation.

The Foundation aims to provide help and grant small wishes of children and young people with a heart disorder who are on the cardiac surgical waiting list at Yorkhill Sick Children’s Hospital. With your help they and their families can experience the joy and excitement of having a small wish granted to give strength and hope for a speedy recovery.

The Foundation aim to provide a journal for each child/young person receiving treatment from the cardiac team with the hope to give some comfort through documenting their own personal journey.

The Foundation has their own holiday home, ‘Zak’s Haven’, for heart families to have a short break away from it all and have some quality family time together.

The Foundation means a lot to goodeggorbadegg and it would be wonderful if you could help support the efforts of the Foundation to help other ‘bravehearts’ facing heart surgery to have a gift following their surgery.

Our Just Giving Page

Goodeggorbadegg have set up a just giving page to allow donations to be made to this wonderful cause. Your generosity is appreciated.